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Overcoming fears, stigma about palliative care

10 August 2017

Despite the fact prestigious organizations such as the World Health Organization recommend early palliative care for people living with a life limiting illness, negative attitudes and stigma often lead to individuals rejecting palliative care as an option.

At Carpenter Hospice, we have experienced people who refuse care or admission to the hospice because they think palliative care means giving up and simply waiting to die.

There is definitely a stigma associated with hospice palliative care and that’s something that must change.

People identify hospices with end of life and ultimately death.

That stigma and confusion makes the idea of palliative care difficult to accept for some individuals and may prevent them from receiving care that would ease their pain and improve their quality of life.

My experience leads me to believe it is fear, especially fear of the unknown, that creates this stigma.

We are a death-denying society.

We don’t like to talk about death, dying, loss, grief and bereavement.

We sometimes avoid those who are near the end of their life and we often skirt the funeral and the bereaved because we “don’t know what to say.”

This avoidance is why we need to address this somewhat irrational fear because death will be a part of everyone’s life. 

It’s fascinating to witness the stigma disappear when people actually experience hospice care.

I often hear from residents and families, who tell me how they expected the hospice to be sad and dreary, all doom and gloom.

My response is to tell people candidly, “sad things happen but it is not a sad place.”

The truth is a hospice is a place of compassion, caring, laughter and love. It’s more about active living and improving quality of life for whatever time people have left.

Research confirms when a palliative care approach is combined with good medical care, individuals actually live longer and with improved quality of life.

I think health-care professionals would be doing a huge public service by reframing and better explaining palliative care.

We need to understand our options, get past fears and educate ourselves.

Palliative care is an approach to care that is holistic. It addresses not only the physical symptoms but also the psychological, social and spiritual symptoms associated with a life-limiting illness. The goal of palliative care is to make the individual comfortable and improve their quality of life. A palliative care approach is vital for those who are undergoing treatments that may cure or reverse the effects of illness. In fact, palliative care can help people cope with aggressive treatments by getting pain and symptoms under control to actually help individuals fight the disease.

Talking about palliative care won’t kill you. We need to foster an environment where having these essential conversations becomes the norm.

In fact, as a community, I firmly believe there is much to be gained by becoming comfortable and familiar with hospice palliative care options. We need people comfortable not only accessing hospice palliative care when they need it but actually welcoming such care. The reality is the hospice is not where someone goes to die; it’s where they go to live and find peace, compassion, care and celebration in their final days.

Karen Candy is the CEO of Carpenter Hospice.

For the original story visit Inside Halton


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